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ELSA_QOL_Trajectory_JPSM_REVISION_FINAL_CLEAN_30.7.18

Rights statement: This is the author’s version of a work that was accepted for publication in Journal of Pain and Symptom Management. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of Pain and Symptom Management, 56, 5, 2018 DOI: 10.1016/j.jpainsymman.2018.07.020

Rights statement: This is the author’s version of a work that was accepted for publication in Journal of Pain and Symptom Management. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of Pain and Symptom Management, 56, 5, 2018 DOI: 10.1016/j.jpainsymman.2018.07.020

Rights statement: This is the author’s version of a work that was accepted for publication in Journal of Pain and Symptom Management. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of Pain and Symptom Management, 56, 5, 2018 DOI: 10.1016/j.jpainsymman.2018.07.020

Abstract

ContextTrends in symptoms and functional ability are known towards the end of life, but less is understood about quality of life, particularly prospectively following service referral.

ObjectivesThis study compares quality of life trajectories of people with and without cancer, referred to volunteer provided palliative care services.

MethodsA secondary analysis of the ELSA trial (n = 85 people with cancer and n = 72 without cancer). Quality of life data (WHOQOL-BREF) were collected at baseline (referral), 4, 8 and 12 weeks. Socio-demographic data were collected at baseline. We specified a series of joint models to estimate differences on quality of life trajectories between groups adjusting for participants who die earlier in the study.

ResultsPeople with cancer had a significantly better quality of life at referral to the volunteer provided palliative care services than those with non-malignant disease despite similar demographic characteristics (Cohen d’s=.37 to .45). More people with cancer died during the period of the study. We observed significant differences in quality of life physical and environmental domain trajectories between groups (b = -2.35, CI -4.49, -0.21, and b = -4.11, CI -6.45, -1.76). People with cancer experienced a greater decline in quality of life than those with non-malignant disease.

ConclusionReferral triggers for those with and without cancer may be different. People with cancer can be expected to have a more rapid decline in quality of life from the point of service referral. This may indicate greater support needs, including from volunteer provided palliative care services.

Bibliographic note

This is the author’s version of a work that was accepted for publication in Journal of Pain and Symptom Management. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of Pain and Symptom Management, 56, 5, 2018 DOI: 10.1016/j.jpainsymman.2018.07.020